Startling Realization; I am not like everyone else

For a long time, my parents tried to instill in me that the way I went to the bathroom didn’t make me different than anyone else. They wanted me to feel like I was the exact same person I was before I was diagnosed with ulcerative colitis, only my “plumbing” was different. I heard over and over again from not only my parents but the doctor I loved so much about how I could do everything that anyone else could which included eating anything and everything. While it always bothered me to hear this, I was always able to brush past it.

I was always able to do that until things started getting a lot worse for me physically. One day I actually asked my doctor why he was telling me all of the things he was because I knew for a fact that they weren’t true. I knew I couldn’t go out and eat all of the foods I enjoyed before I was diagnosed and I knew I no longer possessed the same strength I had when I was swimming miles and miles before and after school. I just knew my body was different and the fact that he wasn’t acknowledging it and hearing my parents telling me that the only thing that separated me from the rest of the world was the way I went to the bathroom made me feel like there was something wrong with me…

Because I knew the truth.

After I asked my doctor directly why he was telling me all of these things, he responded to me very sincerely by saying that he wanted me to have the mentality that I could go and do anything I wanted. He never wanted me to feel like everything I had gone through was going to hold me back. He knew my personality very well after treating me for ten years and knew that I was going to be cautious on my own so him putting even more demands and limitations on me would have hurt me further.

I understood.

I have had a busier couple of months than usual and I feel like I have been paying for it in a way. Last week I worked with my dad in the city. They had market week so I commuted with him into Manhattan Monday-Friday and pretty much had five 12 hour days by the time I left the house until I got home. I love being out and about, working and making money but it is hard for me. It is difficult not eating and drinking all day in an effort to limit the amount of time I spend in the bathroom. I still spent a good amount of time in there and that is because I actually forced myself to drink water and vitamin water away from my house. It was exhausting to not only have the long days, but coupled with not being able to eat and/or drink when I feel like my body needs it was eye opening for me.

As I walked through Grand Central Station on the way home, I actually looked at some of the people who were eating or grabbing something for the train and I couldn’t remember what life was like before I had to think about every single thing I put into my body. I was actually baffled at the thought of seeing my dad’s co workers and clients eat out of the candy bowl without giving it another thought. They just ate and carried on about their business!? That was seriously another life for me.

I got through the week like I knew I would and was extremely happy I did. I then had a busy but great weekend. And then I crashed. I planned to take a couple of days and go upstate to relax but I couldn’t even manage to do that. I had a good conversation with my mom on Monday since it was eleven years of me having my colon removed. She told me I should take this week as a time to recover since I have a busy weekend ahead of me as well. When she said that I asked me why she felt I needed that if I was “just like everyone else” and how since I am only 26 years old, I really should be able to do what I did last week and weekend and then get up Monday morning and do it all again.

Her response to me was that she and my Dad wish that was the case. They wish I was the same person I was before I was diagnosed. They wish my body didn’t need a large intestine. They wish I was “fine.”

But the truth is that I may be healthier without my diseased colon. I may be a lot better off than I ever have been but I am not fine. I am not cured. I am not the same as other people who are out there living their life without illness. I know everyone deals with something so I am not trying to negate that or make this a whoa is me thing whatsoever.

This was just the first time in a while where I realized that I am not like everyone else. And since I am also trying to look for a job and make it in the “real world,” it was upsetting to me. I always hated the fact that some organizations claim the removal of someone’s colon is a cure for ulcerative colitis like I wrote in this post here Can UC be cured?

And I never believed my parents or doctor when I was told that I was just like I was prior to my ulcerative colitis diagnosis.

I am now realizing that everyone has their reasons for saying the things they do. Maybe they need to believe it themselves. Or maybe (like the case with my doctor), someone feels that if they say it enough you will believe it. That may be the case and that may not. I like to think that everyone has the best intentions. I know that has been the case in my life and I hope it has been for yours (although knowing many of you I am saddened that it isn’t the truth).

You know yourself best. Inflammatory bowel disease changes you. I talk about the emotional aspect of life with IBD a lot but physically, you are never the same either. Or at least I haven’t gotten to that point yet. And that is okay. Be patient. Just as it takes your mind to heal from psychological trauma, your body deserves the same.

About Marisa Lauren Troy

I am a 28 year old girl who was diagnosed with ulcerative colitis at the age of 13, and since had 14 major operations. I have been in and out of the hospital due to many complications, blockages, and usual UC symptoms.

I feel the same as the person who commented above…but I “hate” that you have to deal with this. I rationalize as my way to cope and say we all have something to deal with, this is your something, you are amazing and getting better everyday, you are learning so much about yourself all the time…and did i say you are AMAZING…love you my GF and I am so proud of your strength, determination, intelligence and sensitivity…<3

http://jellwood76.wordpress.com jellwood76

Hey! I can identify with many points you raise regarding to coming to terms with this life altering disease. I was your age when diagnosed (26). I am now approaching 38. When I was finally diagnosed I felt I was lied to by healthcare professionals. They threw around words such as chronic, in curable, etc. Nobody said to me, this disease is going to get worse and we have no idea why! One specialist even told me, it doesn’t matter what you eat!!! I’m sorry I have no answers for coping with life with UC. One thing I do know, not eating and especially not drinking water is very bad for your colon. Vitamin waters are nothing more than flavored sugar water. Sugar and caffeine are very bad for people, even those who appear to be healthy. One more thing I have learned on my journey, doctors may be well meaning but they don’t know your body. Keep smiling and stay happy

http://risaroo86.wordpress.com Marisa Lauren

Thanks for your insights! I definitely know that about vitamin waters but I am surprised a lot of people don’t!.. I actually drink vitamin zero (not that that’s super) but it does have vitamins and leaves out the sugar. I also avoid caffeine completely. It is such a science about how to manage your life! hope you are staying well and enjoying every day!

http://jellwood76.wordpress.com jellwood76

It’s a science of trial and error! Most certainly enjoying life! Keep on track with your positivity and strength

http://crohnsknows.wordpress.com jtbear3ca

Reblogged this on Crohn's Knows and commented:
A great post from a friend. There really is no “just like it was” with IBD.

val0525

Marisa,

This is a very touching post. This cruel diease manifests itself in so many ways. You amaze me everyday with your strength, courage and your ability to connect with so many others who have felt alone in their journey. Your insight and sincerity are touching people in ways you may not even realize.